Deleted
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Jun 2, 2024 6:47:41 GMT
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Post by Deleted on May 18, 2021 7:48:46 GMT
I wish your husband well,
When my husband had his aortic dissection , the diagnosis was nearly missed.
It is such a rare condition , the classic symptoms are described on the John Ritter site which has been very useful.
In my husbands case , the presentation of symptoms were not typical.
He had mild chest pain, followed by a dark webbing over his eyes. His blood pressure became low. The doctor congratulated him on it. As it turns out the low blood pressure was a sign of internal bleeding. He had to persist in pointing this low reading out over several medical examinations with different staff. He kept explaining that this was unusual for him.
He was sent to hospital where he told he was fine and then on the point of discharge they decided to do one last check. Due to his eye dark webbing they decided to check him over for a stroke. He was given a doppler ultra sound on the carotid artery in his neck, and luckily they found an exit from a dissection.
After that and a CT scan he was rushed to a specialist heart hospital for emergency surgery.
The hospital was two hours away, and he just barely made it alive. This gives me the shivers to talk about. The majority of people do not survive.
There are two types of aortic dissection , called A and B , which are ascending and descending parts of the aorta.
It is important to have symptoms recognised early as people can die within hours or days.
One thing to point out is that I listened to an account of a woman in the uk who had it, but she was initially dismissed by doctors as either having anxiety or accused of being a drug user . Her family insisted that this was not the case and that advocacy saved her.
For anyone who has experienced aortic dissection in the uk, the British Heart Foundation can be a great source of support and information. I was lucky to speak with a nurse who had real life experience of working with patients who had aortic dissection , she told me it could take up to 18 months to reach a new normal.
The surgery is long and complex, and the awful statistic is that those people who survive long enough to get the surgery , many of them will not survive the procedure . There is 75% chance of death during the operation itself .Without the procedure there is 100% chance of death .
This is such a rare condition that when my husband was back in our local hospital following complications after surgery, the Cardiologist called a number of junior doctors and medical students over telling them , they might never meet another case during their careers.
In the weeks following surgery I would advise checking temperature as this can be an indication of infection.
There will be 6 to 12 monthly tests annually going forward. These tests check for swelling for aneurysms and leakage from the surgical repair.
Many people with Marfens syndrome need to aware of the symptoms as their condition carries an associated risk, for others like my husband , it occurs out of the blue. In his case he was coughing when it happened.
I am still feeling abit emotional after the other thread as it brought back a lot of feelings . So I apologise for quickly dipping in and out of this thread.
Wishing everybody who has experienced aortic dissection and other life threatening heart conditions all the best.
My husband ( touch wood ) is still recovering after 2 years.
I am going to have to go now because I am crying.
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Post by gillyp on May 18, 2021 8:09:21 GMT
@ktc I’m so sorry you have had this experience and all the other Peas who have told of their experiences too. I was not even aware of the condition until I opened this thread.
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theshyone
Pearl Clutcher
Posts: 3,411
Jun 26, 2014 12:50:12 GMT
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Post by theshyone on May 18, 2021 9:10:11 GMT
Best wishes, it is a long slower recovery. So glad it was caught and could be treated
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Post by Patter on May 18, 2021 9:32:44 GMT
So thankful he was one of the blessed ones to make it through this! This happened to someone at church last year. He is doing very well now. And my daughter has had many open heart surgeries the last at age 21--she has an artificial aortic valve and patch on her aorta and an artificial mitral valve. Please message me if you would like any info on recovery. Glad he already has his chest tubes out. That's huge and a great sign. Hugs to you all!
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Post by gar on May 18, 2021 10:23:58 GMT
What a scary experience for you both! Wishing him well now.
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sweetpeasmom
Pearl Clutcher
Posts: 2,594
Jun 27, 2014 14:04:01 GMT
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Post by sweetpeasmom on May 18, 2021 11:11:42 GMT
That is scary! I am so glad he is going to be ok.
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Post by mikklynn on May 18, 2021 11:17:13 GMT
Oh, how terrifying. You really do need to take care of yourself. You have also suffered a real trauma. Please, ask for help with whatever you need.
I am so glad he is on the road to recovery.
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Post by peace on May 18, 2021 11:19:40 GMT
How incredibly frightening- and how wonderful he is still here. Sending healing thoughts and I hope you, too, can recover quickly from your trauma!
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Post by bearmom on May 18, 2021 12:02:40 GMT
How scary and lucky for you. I can’t imagine the stress the last few days. Prayers for his continued recovery.
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scrappert
Prolific Pea
RefuPea #2956
Posts: 7,811
Location: Milwaukee, WI area
Jul 11, 2014 21:20:09 GMT
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Post by scrappert on May 18, 2021 12:32:35 GMT
Prayers for a healthy recovery and to your family. It will be a slow process, as other have said, about a year to year and a half he will start to feel like himself again.
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oh yvonne
Prolific Pea
Posts: 8,009
Jun 26, 2014 0:45:23 GMT
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Post by oh yvonne on May 18, 2021 13:49:06 GMT
oh my gosh what a terrifying ordeal for both of you. You poor thing, I can't imagine <hugs> prayers that your DH heals completely. This truly hits home, you never know from one day to the next, we take our good health for granted, truly.
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Post by 3SugarBugs on May 18, 2021 15:04:42 GMT
I'm going to PM you, but here is my DH's story in a nutshell... December 2012 we were out at a Christmas Party, came home and he had some pain in the middle of his back. Oddly, we thought he had heartburn, so he took some Tums and we went to bed...I still shudder at typing that. Next morning - pain is worse, he just didn't feel right, so we went to the ER. They did a variety of tests and during the CT with dye, they immediately called the surgeon. He was having an aortic dissection. I remember telling the story here, but it's one of those moments you will never forget. The surgeon comes running into the room and says "I'm surprised you are still alive"....thoracic surgeons are not known for their bedside manner. Like above, I was told he had about a 20% chance of surviving surgery...it was terrifying! My DH was 38, and it was identified that he had a bicupsid valve instead of a tricupsid valve...in short he had a birth defect. The surgeon did not give me a choice, and placed a mechanical valve because of his age. His words were "I never want to have to open him up again". He recovered like a champ, and did just fine on the blood thinners...bruised easily, bled for a decent amount of time when cut, but no other issues. About a year after his surgery, they could see a pocket around the "graft", but felt like it was scar tissue and it didn't change year after year. Fast forward to June 2020....we thought he had COVID, chills, fever, etc. Became dehydrated, so we went to the ER on Monday after Father's Day. They agreed it was probably COVID, he was probably on the backside of it, got a bag of fluid, and they would call with results. Tuesday morning the call came in. Please come to the ER immediately. He had Strep B in his blood, but no COVID. He had a "deep" dental cleaning a month prior and took his antibiotic like always. Apparently one of the "pockets" stayed open and the Strep B entered his blood stream. Our original surgeon had kept him in his practice and saw him once per year in addition to his cardiologist. He came into our hospital room, closed the door and said "I'm not here, we haven't had this conversation, but you need to ask for a transfer to Mayo or University of Iowa in that order. The Strep is attacking your valve and it will have to be replaced...I put them in once, but I don't replace them. Medicine is now all about money, not necessarily where you should be for the best care and they will fight you, but don't give in." Thank God for that man. They did fight us, but we didn't give in and off to Mayo we went. I could write 10 paragraphs on the care there, but it was nothing short of AMAZING. He had surgery on July 1st, and received a brand new mechanical valve...one that has the potential of not needing blood thinners long term and a pacemaker. The "scar tissue" that appeared after his first surgery was really a pocket of infection that had sealed itself off, but it could not withstand the Strep B. Recovery was much tougher...he was 8 years older! Original surgeon called or text me every day we were in Rochester...speaks volumes about his character and the care he takes with his patients. We were worried about the pacemaker, but really it has been no big deal. Fast forward to last Wednesday. He went in for his normal echo. Came home and immediately got a call to come back. His mitral valve is now leaking, likely due to the trauma on his heart from prior surgeries. He goes in for a transesophageal echocardiogcram (TEE) on May 27th to onfirm what they saw on the regular echo. We're scared, and my heart is breaking for him, but we will get through this. He is the strongest individual I know. Our DD graduates next week, so we're not telling the kids until after, and just trying to stay positive. Original surgeon has prepared us, this means another trip to Mayo and another fight for transfer. He is a unique case and this will NOT happen to your DH. He will continue to recover...just tell him to be patient with his progress. His life, outside of some meds and eliminating contact sports, will return to exactly as it was, and he'll feel great...it just takes time. Also the caregiver often gets overlooked...it is A LOT of stress on you! Take some time out for yourself and give yourself grace when you get frustrated...it is exhausting and it's bound to happen. Remind yourself that you are normal, stressed because you love and are worried about your husband, and sometimes your patience will be tested. You guys are going to ROCK this recovery, and in 6 months you will look back and be amazed at how far he has come! I'm here anytime you want to talk, please reach out
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Deleted
Posts: 0
Jun 2, 2024 6:47:41 GMT
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Post by Deleted on May 18, 2021 17:22:16 GMT
I want to wish everyone that is going through a worrying time with heart problems or any other health problems that my thoughts are with you , and wishing you all the best.
It is so good to see comfort and hope being shared, it makes a big difference.
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Post by lurker on May 18, 2021 17:48:07 GMT
OP, hoping for the best possible recovery for your DH. And for you, take care and have lots of patience because you're going to need it. My DH is the nicest guy in the world but in times of medical issues he saves all his grouchiness for me. After 46 years, I'm glad he's still around.
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Post by anniefb on May 18, 2021 18:28:14 GMT
So terrifying. Thinking of you both and praying for your DH's recovery.
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Post by librarylady on May 18, 2021 18:51:45 GMT
So glad he survived. Prayer for healing to go well.
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Post by Mel on May 18, 2021 19:07:15 GMT
Prayers for smooth & speedy recovery!! And thankful he made it!!
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Post by jenjie on May 18, 2021 19:45:17 GMT
Oh my word! I’m so glad you called 911, it was diagnosed correctly and his surgery was successful and he’s on the road to recovery. Praying for you all. Of course this has affected you deeply. You experienced all of this with him. Gentle hugs as you recover from this too.
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Post by hop2 on May 18, 2021 19:58:05 GMT
My thoughts & prayers are with you & your DH
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Post by Really Red on May 18, 2021 20:07:50 GMT
Just TERRIFYING! I am so glad you were there!!
My DD has had two OHS, but no aortic dissection. Your DH got his chest tubes out quickly, so that is GREAT. That was the hardest (most painful part). For pretty much everyone we know who has had OHS, 3 weeks is when you start to feel normal again. By 6 weeks, it's hard to imagine what you went through. My DD could barely move for the first 10 days of the last one, but by 2 weeks was doing okay and 3 weeks felt pretty good. Even with different OHS, it's often similar. I hope it is for your DH.
It is humbling to be in that position. So glad you were there!
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ModChick
Drama Llama
True North Strong and Free
Posts: 5,062
Jun 26, 2014 23:57:06 GMT
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Post by ModChick on May 18, 2021 20:21:56 GMT
Yikes I am so sorry to read this. Well wishes and prayers for a speedy recovery.
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Post by Zee on May 18, 2021 20:24:43 GMT
So glad to read he's doing well and that you were there to call. Very scary for you and your daughters. I hope his recovery continues to go smoothly!
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Post by peasapie on May 18, 2021 20:35:31 GMT
No experience, but you certainly have my concern and best wishes for your husbands complete recovery. What a frightening experience for you both!
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Post by hockeyfan06 on May 18, 2021 21:07:59 GMT
Sending thoughts and prayers for a good recovery.
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edie3
Drama Llama
Posts: 5,498
Jun 26, 2014 1:03:18 GMT
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Post by edie3 on May 19, 2021 0:46:57 GMT
He had an angel on his shoulder. Prayers for a smooth recovery.
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Post by jennifercw on May 19, 2021 13:49:55 GMT
@ktc - Wow, what a story you have to tell! (((hugs))) I wish continued healing for both you and your DH. 3SugarBugs - Quite a story for you as well. (((hugs))) I hope this latest complication is "easily" solved and that your DH is back to full health very soon. I really appreciate your words of encouragement for us, even in the midst of your new bump in the road. I did get your PM as well and will be in touch if needed! I'm not really sure what made the ER doc suspect an aortic dissection with my husband's abdominal pain, nausea, and a triage BP of 124/73 - after the "clean" CT came back - but I will forever be grateful that he did! I was told how risky the surgery was - but also that he would for sure die without it so it wasn't like there was another option. It was terrifying. And yes it was long. I was initially told 6 hours but it ended up being a bit less because DH did not need a valve replacement. oh yvonne - You really don't, do you? What keeps running through my head a lot is how very careful DH and I were during the pandemic, staying home, wearing masks, saying no to socializing because we judged it to be too risky. And then this happens. Really Red - Good to know, thank you! I wasn't with DH when his tubes were removed so didn't realize it was painful. But I do know he is really glad they are gone. Thank you all for your continued prayers and good wishes. DH had a bad day Monday but better yesterday. He is off the oxygen, on Tylenol for pain management, and taking walks.
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Post by FLA SummerBaby on May 19, 2021 14:31:56 GMT
How scary for both of you! Prayers for a quick recovery.
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Deleted
Posts: 0
Jun 2, 2024 6:47:41 GMT
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Post by Deleted on May 19, 2021 14:44:35 GMT
Glad to hear he is on the road to recovery. one thing I remembered - As you have children and if your husband has any brother and sisters , it is normally recommended that they get tested to see if they have specific heart abnormalities . Things can be checked and monitored and any potential problems nipped in the bud. I was also going to suggest a home self test INR meter going forward to measure blood thickness going forward but I realised since that your husband has not had a mechanical valve replacement so I dont know whether that would apply. I don’t whether your husband has been put on blood thinners like warfarin like my husband but we find the meter very useful , especially when on any different medication as it can affect clotting times. Green veggies are a culprit to watch out for as well. He also has syringes of heparin at home to use if his blood becomes too thick. Warfarin needs to be handled very carefully and can have a delayed cumulative effect , if blood becomes too thin it requires emergency treatment. hugs also want to wish 3SugarBugs all the best for your husband’s upcoming surgery, hugs too.
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Post by jennifercw on May 19, 2021 15:19:04 GMT
Glad to hear he is on the road to recovery. one thing I remembered - As you have children and if your husband has any brother and sisters , it is normally recommended that they get tested to see if they have specific heart abnormalities . Things can be checked and monitored and any potential problems nipped in the bud. I was also going to suggest a home self test INR meter going forward to measure blood thickness going forward but I realised since that your husband has not had a mechanical valve replacement so I dont know whether that would apply. I don’t whether your husband has been put on blood thinners like warfarin like my husband but we find the meter very useful , especially when on any different medication as it can affect clotting times. Green veggies are a culprit to watch out for as well. He also has syringes of heparin at home to use if his blood becomes too thick. Warfarin needs to be handled very carefully and can have a delayed cumulative effect , if blood becomes too thin it requires emergency treatment. Thank you! I know the cardiologist mentioned doing some testing to see if we can determine the cause of the dissection. So we very well may learn something that the kids and DH's brother would need to know. I'll keep that question in mind. I also know he is currently on an anticoagulant but was under the impression that was simply to lower risk of post op clots. The surgeon did mention there would be a need for some type of medication for the rest of his life should a mechanical valve be necessary - honestly that whole conversation is pretty blurry. I don't remember anyone mentioning if he will need to continue blood thinners long term. He will be on beta blockers and I'm guessing also something to control cholesterol.
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